I’m feeling a bit down and sorry for myself ...lol, do you ever have those days?
I’m trying to fill out PIP form and you know when you’re writing your worst day scenario. Frustrated too cos I’m still struggling to breathe with the step up of my inhalers although my Peak flow is improving. I’m not bad enough for hospital but need steroids. Will ring GP tomorrow.
Sometimes it’s an accumulation of lots of things isn’t it! My mum in her own Parkinson’s world forgetting that anyone else might struggle with stuff too.
Sorry...just needed to waffle!
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madonbrew
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You’re not waffling madonbrew and it’s good to chat. Pete has off days as do l especially with this virus still around.
I think things come to a head in the end but we somehow manage to carry on. I’m sure your mum has her struggles so forgets you have different struggles of your own but that’s how it goes sometimes.
Thank you Sassy! It is weird with this Covid around isn’t it. I just wrote on another post how it’s hard not being able to have face to face contact with people. It just makes trying to get things sorted so much harder.
I am mums carer which is fine...we get on well mainly! It’s just today I’m struggling for breath and just want someone to understand how exhausting it is when you just need a proper breath and can’t get it.
So sorry your feeling down. Ive been the same lately as seem to hsve to fight for everything regarding heslth! Just had a run in with 4 year assessment for son. I couldnt get socument out of surgery even though it was information I passed to them with doc saying its confidential between her and ESA! The phonecalls I had to make! Got the form another way and it was illegible. Even the chap at the Disabilities place said they had trouble deciphering it. Can you get help with your PIP form via Citizen's Advice? . I had terrible time fillimg out ESA for son and was thoroughly fed-up by the end of it. This pandemic is not helping either.
Yes, I have those days. Some days my kids are on my mind & I feel hurt that they don’t seem concerned. My situation seems to be out of sight out of mind. I guess that’s how it is with kids. It’s certainly a far stretch from those adoring little munchkins clinging to my leg once upon a time. Then I force myself to do anything that takes that memory & those thoughts away!
Aww Maricopa! I understand...well, not about the kids exactly as I don’t have any, but the feeling of hurt when people/family are not concerned! I find it a bit lonely sometimes.
Maybe sometimes it’s difficult for our families to deal with and see. I think sometimes my mum just doesn’t know how to respond so she goes into her ‘ I’m more needy ‘ mode. It drives me mad sometimes but I just have to try deal with it. A change of company helps! Even just a quick coffee with a friend!
So sorry you have a rough time and a bad day. But I feel from the way you have written that it is a blip, an occasional mood that happens. So tomorrow is another day. Well done for caring for your mother. She is very lucky.
Thank you Kate! That is totally true! Tomorrow is a new day!! A fresh start!
It’s mainly fine looking after my mum... I think it’s just been a bit more difficult with lockdown, not having outside company. But gradually I am trying to meet up with some of my friends for a socially distanced coffee &chat!
Heck yes. Been down and feeling sorry for myself all weekend.
A recent flare up ( which invloved hospitalisation) has left me with much worse breathlessness in spite of a truck load of medication. I hope that you are able to avoid hospital and manage your current problems at home with the help of your GP.
I spent most of yesterday afternoon completing a PIP review form. In itself exhausting, as I'm sure you found.
It must be hard for you being a carer too. I remember when I was a carer for my mum many years ago that she tended to turn a blind eye, so to speak, to my deteriorating health, which, looking back, I can understand as she struggled to cope with her situation.
It is, as you say, often a build up of little things that get to us, all of which we would have taken in our stride when fit and well. Certainly being isolated due to covid doesn't help at all, especially having to sort most things out by telephone instead of face to face.
Hope you feel better all round soon. Best wishes x
Oh no...sorry to hear you’ve been in hospital! It’s hard like you say, when you’re still breathless even with a truckload of meds! Just to breathe! Really hope you start feeling better soon!
Yes...it’s understandable when people have their own health problems...my dad isn’t great either so she worries about him too. I guess it all gets a bit much for her sometimes!
Was nice...I just had a good catch up with my friend on WhatsApp & had a giggle which was good!
Thank you and everyone so much for your lovely replies! It’s such a blessing being on this forum! You all really helped make my day nicer!!! 🤗🤗🤗
Dee xxx
That PIP form is the worst for bringing any one down, its awful facing up to it all which is what that form does. Just do a page at a time and stop for a distraction when it gets too much. I wonder if CAB are open for business yet, they could help you fill it out.
Looking toward the end of the process and wishing you well with your application.
Thank you Bkin...it certainly is a nightmare form to fill out isn’t it! And like you say, facing up to it all! Actually I will ring CAB as I rang them just before getting my form & they said ring when I’ve got it so I’ll do that tomorrow.
Hi struggling with COPD i think we all have bad days. Things have got worse since being told you can't go out. I have put on weight and find i want to sleep a lot due to the weight and not enough exercise. Even though we can go out now i find i only want to go places where there is very few people as i can't breathe with a mask and have tried a face shields but still struggle to breathe.
I am trying to get my self out of this funk but finding it hard.
My husbands family don't understand that i can't just go for a long walk and struggle more on wet days. My mother in law is late 70's and does zumba and my sister in law is a gym freak.
I find when im struggling with medication the respiratory team at the hospital help more with advice as they are trained in this field.
Everyone needs to have a ‘me’ moment because with all the will in the world, sometimes things become too much. I dare say we have all felt like that and all will again. We just have to remember that it doesn’t last 😃
Hello dear madonbrew . I understand completely when you feel like there is no end in sight to the rough patches. It can be so very dispiriting, tiring and plain frustrating. Have a think back to the last time you had a really nice day. And remember those kinds of days will come back, sometimes it takes more time that's all. Thank you for sending me a lovely message even when you were feeling down. It means a lot to me. Take care my friend. *HUG* xx 🌿🥀🌸🌿🌱🌷🌻🍀🌱🍃🌷
Thank you Cas!!! It’s so good to hear from you!!! I was worried!
I think I really simply just need a hug...a physical one! My family don’t do hugs with each other, and because of social distancing even you can’t give your friends one 😢 and vice versa!
But everyone’s kind responses is feeling like a hug 🤗 which is meaning so much!
And that is true! Those lovely days will come back!!!
Oh yes those days when it all feels too much. I think we are living in strange times & that doesn't help. You can be kind to yourself as we are allowed off days & by telling folks about it does help & you feel less alone. À few words from people here on the Forum can give you strength to keep going. Hope today is easier for you
I love that! That’s some brilliant suggestions!!! I play the piano...well getting much better since shielding & it’s always a nice way to escape for a bit! Painted my toenails & went for dinner with my sis this evening!
Glad you liked that. Learn a new instrument? Playing piano is soothing. Listening to the radio is good too. Talking books is another option. Zoom has brought a lot of people together. Somebody on here organises zoom chats. Video conferencing in case you dont know.
Hi Madonbrew, As if being ill isn't enough the forms we have to fill in might as well be in Chinese, we all have good days and bad ones, as a few have said CAB are the ones to see they were fantastic with me helped immensely with the PIP form stay safe and well and good luck.
Had one of those yesterday too - (mother's serious illnesses as usual had to come ahead of personal mental health and limits of human endurance - All of us with real experience understand what you're going though - it's normal in your circumstances). I think those long government forms don't help.
The good thing is everything changes - usually after a good night's sleep. Hope you feel better mentally and physically later today or tomorrow.
Thank you Helen! I’ve got steroids now so should help!
I don’t mind caring for my mum...I’m happy to do it, but I just need some days to have my own moments to just be me,Dee. Just do something fun without worrying she’s gonna fall every time she goes anywhere, or having to find her walking stick for her every 2 minutes. Just more challenging when you yourself can’t breathe well isn’t it!
But like you say, things change & tomorrow is a fresh day! 😊
Filling in a PIP form is enough to get anyone down they are awful. Remember to put your worst day on the form, which in itself can make you feel low.
We all have good days and bad days, today could be bad, tomorrow will be good. Telling people how you feel is good, a problem shared is a problem halved.
Hi sweetie, sorry you're low at the moment. I've just done my PIP form - taken me 3 weeks and I'm exhausted, found I did better when I did a couple of questions a day but I kept putting it off. You'll get there my lovely - keep your chin up and have a nice cup of tea. Take care and be kind to yourself xxxxxx
Glad you got your form done! It’s knowing how to answer isn’t it, to cover the problems! Like the ‘how far can you walk?’ Well I’m wheezy all the time and have a billion inhalers & tablets just to breathe but I keep going and look mostly normal 😂😂😂😄...depending who you ask!!!
Aww thank you! Think I’ll ring CAB to help me. My consultants...am under 4 different consultants between 3 hospitals, have written me letters so hopefully that will help too!
I’m also having one of those days today. Think I’m going stir crazy with the lockdown. Haven’t been out since January. Just had a phone call from Wythenshawe hospital ventilation to say I will be having a telephone consultation tomorrow between 9.30 and 4.30 so hopefully will feel better by then. I’m also struggling with breathing today more than usual. Let’s hope we both feel better tomorrow.
I think all of us, whether we admit it or not, are having days like these at some point. Being so isolated is not good for any one And we are bound to get depressed. Do not keep it to yourself and get help wherever you can. Good luck.
We definitely all feel it so don't feel your a burden on anyone here, I'm fairly new to this group but I have quickly learnt we are all here for each other, I had my go a couple of weeks ago, lol, I went back to work and I honestly think a lot of people there thought I was having a ball sheilding for 4 months, they have no idea what it's like when your struggling to breathe, it's one of the worst feelings I have ever experienced, it really does get you down. I just always try to think to myself I know their are people on this group who have it much more worse than I do, and hopefully tomorrow will be a better day, I am slowly coming to realise it really is the nature of lung desease, a few good days and a few bad days, nothing seems really consistent with it. I do hope you feel better soon, try and keep your chin up and try to stay positive. Take care ☺️
Thank you TG58! People have no idea what it’s like not being able to breathe do they unless they’ve experienced it! I got prednisolone from dr today& even my sister this evening just said ‘you don’t need to take them though do you?!’ I nearly choked on my drink and thought ‘No, I love steroids for fun! For the crazy glucose levels, the acne, the moon face....!’
Hmm, work colleagues who don’t understand! They should be grateful they have good enough health that they didn’t need to be shielded in the first place!
I can understand in the current situation you are feeling down. I think a lot of us are shielding or at least being more careful out and about and it’s hard to get back to any kind of normality. Hope your breathing gets better soon. I think the cooler weather will definitely help x
Thank you Becky 🙂 I have steroids now, although will start them tomorrow as I have a blood test to check my IgE/eosinophil in the morning and I don’t want the pred to affect it.
There’s lots going on I guess hey! My consultant ...not asthma one, said he doesn’t want me to go back to my workplace so I’m also currently unemployed. Just trying to get everything sorted.
if i can just give a bit of advice try and photo copy it for next year , it is hard having to put in writing your worst days , but once its done its done , wishing you well , difficult times we are going through 🌹x
That PIP form is enough to reduce anyone to a gibbering wreck. Took me a week to fill in mine. Best tackled in little bits I found. I do hope your application is successful and you are feeling brighter soon.
I actually got mine at the MR stage having failed initially by a couple of points. Complete mystery why they did about face and awarded me lower level of both components ! The only extra evidence I included was a letter written by my daughter. If you dont get it , it is always worth appealing.
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